In chapter 4, Dr. Park returns his discussion to one of my favorite topics in managing CPAP patients, and he sums it up quite nicely and in bold no less: It’s your mindset. For a book that’s only a little over 100 pages long, it is inspiring how often Dr. Park returns to this topic to help people realize they hold the power within themselves to determine whether or not they will succeed with PAP. So many other books, research papers, and lay articles incessantly talk about conventional wisdoms such as find a comfortable mask, be persistent, start with lower pressures, use a humidifier, and don’t give up. Now, all these suggestions are worthy, and Dr. Park addresses them as well, but Totally CPAP is different because it goes to the heart of the matter, which in a word is: YOU! And, ultimately the way you choose to think and feel about CPAP.
Even more to the point, he immediately brings up the emotional challenges anyone might face when confronted with the diagnosis of obstructive sleep apnea, and I was extremely impressed that he used the word “traumatic” to describe how someone may feel about learning of this diagnosis, which clearly is going to initiate a life-changing experience and perspective. It is remarkable how many sleep doctors do not use the word traumatic or the term we use, “traumatizing,” in describing patient responses to either the diagnosis of the condition or its treatment with PAP therapy. We have used this terminology for a long time because we work with so many psychiatric patients with OSA who report having been traumatized by previous unsuccessful encounters with CPAP. Yet, in the actual scientific literature of sleep medicine, where you would expect to see the latest and greatest discoveries to help patients overcome barriers to PAP, the conceptualization of a traumatizing experience with OSA as a diagnosis or regarding CPAP as a treatment is almost never mentioned directly and rarely alluded to indirectly. Despite the facts that millions of people have failed or rejected CPAP, the majority of these individuals who might eventually return to a sleep center often take years to build up the courage to retry.
Next, to help the reader work through this process Dr. Park cites the work of Mike Moran at CPAPtalk.com who apparently coined the term: “Seven Stages of CPAP.”
To briefly summarize, there is the initial denial of the condition followed by the eventual realization that something must be wrong with your sleep if others are commenting on your scary breathing observed during the night. Then, the individual completes the diagnostic testing phase, after which he or she may often navigate through the healthcare maze that not infrequently leads to many rounds of frustration in the quest to make CPAP work.
Last, there are the related areas of immersion, ownership and inflation. With immersion, your commitment level is on the rise, and so you make the effort with diligence and dedication to leave no stone unturned. You probably bug your sleep center staff and the DME for support and advice. You have probably found a friend, family or a neighbor using CPAP who provides motivation as well as pearls for success. You are also looking on the internet for advice, not to mention reading Dr. Park’s Totally CPAP book. For such individuals, the immersion process means you are tapping into your curiosity and can-do spirit to problem solve and trouble shoot, and for most CPAP users this phase is often key because it leads directly to success. In particular, success most commonly means that your use of the device has provided you with tangible benefits such as more consolidated sleep at night, less trips to the bathroom or more energy during the day.
Ownership refers to the end result of all your immersion activities. Once you learn all the ins and outs and dos and don’ts of PAP therapy, it becomes very clear you have mastered nearly everything needed to maintain regular use of the device. Some of the more simplistic and yet crucial things include finding the right mask or masks for your facial structure, gaining confidence in the fit and recognizing when new cushions are needed or when mask liners must be used. Additional steps include experimenting with additional tools like nasal dilator strips, chinstraps and even eye coverings to minimize any air blowing in your eyes. A huge insight is learning to know when your pressurized air settings feel too low or too high, because contrary to the conventional wisdom, sleep apnea patients pressures may change frequently, especially in the first couple years of use and thereafter whenever you suffer inter-current illnesses that affect your health, or you gain or lose weight, or you happen to age as you get older!
Inflation is the final phase, but in my vocabulary, it’s an odd choice of words, because its most common usage in society means to see prices rise without a commensurate rise in value, such as real estate prices rising despite housing property not undergoing appreciable improvements. I believe the idea expressed here though is still relevant as the author is indicating an increasing degree of both use and benefit from PAP therapy. The author is attempting to express how individuals may have an initial encounter of great change in sleep with exceptionally noticeable benefits, but then things settle into a more consistent pattern of benefit without a “Wow” factor emerging every morning or during the daytime. Though I understand this pattern, the problem I see in its conceptualization is the equally common phenomenon in sleep apnea patients of the “ceiling effect,” something that we have posted about on this site a few times here and here.
In brief, many sleep apnea patients, if not most, have nothing to compare their response to other than how they felt before starting treatment. They have no way of knowing what an optimal response to PAP should be or what it would feel like. For these reasons, once you obtain a consistent response to PAP, it is more common to believe your experience must be as good as it gets.
Unfortunately, this perspective is rarely accurate, because clinically and physiologically it is nearly impossible to attain an optimal response to PAP therapy in the first few months of use. Rather, it is much more likely you hit a plateau and make the wrong assumption by believing the plateau is the same as an optimal response. In our clinical experience, most sleep apnea or UARS patients require anywhere from 6 to 18 months to sort through a variety of treatment steps, after which they come close to or actually achieve optimal results.
In fact, many years ago a study was published (regrettably, I cannot find the citation in PubMed) that examined patients’ daytime sleepiness problems over a longer period of time, that is, years later. The most remarkable finding was that even after four years of CPAP, patients were still reporting further improvements in their problematic sleepiness, undoubtedly by gaining better and better responses to their PAP device. In our clinic, this perspective is the norm in how we relate to our patients, but you might be surprised to know how many patients are satisfied with their plateau and choose to stick with what they’ve achieved instead of asking themselves should they push for more.
The best example of this entire phenomenon deals with nocturia, trips to the bathroom at night. As you know from previous posts where we talk about OSA impact on the kidneys (www.nocturiacures.com), sleep breathing disorders are a leading cause of trips to the bathroom, because of the strain OSA/UARS places on the heart, which in turn leads the cardiac muscle to release its own natural diuretic (atrial natriuretic peptide). Obviously, the diuretic leads to more work for the kidneys throughout the night, leading to more urine production and then more trips to the bathroom. Yet, OSA/UARS patients do not necessarily consider this symptom as a factor to evaluate in their response to PAP treatment. We discuss nocturia episodes with virtually all patients to monitor how they are responding. And, when their trips to the bathroom are not decreasing as might be expected, we inform patients they are not receiving optimal results, but you may not be surprised to know that a great many patients are unwilling to pursue further efforts until a much later date, because they are more interested in reaping their current gains that feel satisfying and satisfactory at this point in time.
The second half of Chapter 4 involves an excellent summary and tips on the 10 most common objectionable things in trying to learn to use PAP therapy. As we go through the list, I will point out aspects of Dr. Park’s insights that so many patients must attend to, and on occasion, I will add a pearl from our own work.